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Other Intolerances

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I was diagnosed two and a half weeks ago. Been totally gluten free for three weeks (gluten light before I *knew*). I'm getting stronger, and usually feeling better, but I am definitely reacting to SOMETHING.

I've exorcised my house of all gluten! Including lotions, soaps, etc! So, I've been very careful. Only eating at home, new toaster, etc.

Went to an allergist, and have ZERO food allergies according to the 89 scratches on my back.

That being said, there is something I'm reacting to, and I can't figure out what. After feeling much better for over a week - my throat feels tight (might be a sensation in my esophagus...that used to happen when I ate gluten), and I feel anxious. Those things haven't been happening since I went gluten-free.

If I don't have any "allergies" ...how do I figure out what the reaction is to? Do you have any good resources?

I've heard of the Enterolab stuff...but I'm not sure how much I trust it. I know there are people on both sides of that issue with plenty to say. I'd be interested in hearing stories about experiences with them as well.

I was diagnosed two and a half weeks ago. Been totally gluten free for three weeks (gluten light before I *knew*). I'm getting stronger, and usually feeling better, but I am definitely reacting to SOMETHING.

I've exorcised my house of all gluten! Including lotions, soaps, etc! So, I've been very careful. Only eating at home, new toaster, etc.

Went to an allergist, and have ZERO food allergies according to the 89 scratches on my back.

That being said, there is something I'm reacting to, and I can't figure out what. After feeling much better for over a week - my throat feels tight (might be a sensation in my esophagus...that used to happen when I ate gluten), and I feel anxious. Those things haven't been happening since I went gluten-free.

If I don't have any "allergies" ...how do I figure out what the reaction is to? Do you have any good resources?

I've heard of the Enterolab stuff...but I'm not sure how much I trust it. I know there are people on both sides of that issue with plenty to say. I'd be interested in hearing stories about experiences with them as well.

Frustrated. =(

The only way I know of is an elimination diet. However, you haven't told us what symptoms you had before giving up gluten. Were they gastrointestinal, neurological, or what? The answer to your question would really depend on knowing how you were before. Did you have a biopsy showing villous atrophy? This would indicate that you should eliminate lactose, for example.

Let us know your symptoms, before and after, and what you are eating now and we would be better able to offer suggestions.

Is there anything you started eating a lot more of when you went gluten-free? For me, that was corn... and it gives me the same kind of abdominal pain as gluten

The most common foods that cause problems for people (intolerances) include dairy, corn, soy, grains in general, and nightshades (potatoes, tomatoes, bell peppers, eggplant). An elimination diet is honestly the best way to diagnose an intolerance, so if there's something you suspect is a problem try keeping that food out of your diet for a couple of weeks and see how you feel. If you're still not sure, you can do the "challenge" (for dairy, that might mean a couple slices of cheese and a glass of milk each day). If you think a lot of foods are causing you problems and you're not sure where to start, you could try a good basic diet like the SCD to let your intestines calm down. And then... you could slowly try adding those other foods back in.

You might also want to start keeping a food diary along with some notes about symptoms you're experiencing! I've been doing this for a month now and it really helps. I had to eliminate a few more foods due to allergies, but it's encouraging to see the progress I've made.

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Probably some less significant things before this past year (except low iron for all of adult life), but...

One year ago I got the flu (real flu, not stomach flu). Developed lower right abdominal pain. Nearly passed out, was very weak, and had my first ambulance ride. Tests, tests, tests, you know the story. After that, I had a very hard time becoming functional. My digestion stopped (no BM of significance for weeks), went on a near liquid diet (like ensure, but with gluten in it! I'm SURE that helped!). Hard lumps in my GI track, but not a "blockage". I was very, very fatigued (like, needed help to function - eat, use restroom) and missed over a month of work. Iron dropped to 4, Ferritin dropped to 2. Lost too much weight.

Since then, I've had: tingling fingers and toes, crazy fatigue, constipation, anxiety, feeling of regurgitation (without acid), abdominal pain, tight throat, dizziness, light headedness, brain fog, hard to swallow, extremely tired limbs, and all of the aches and pains that go with malnutrition. Dx by biopsy. Blood work was negative, but I was already eating gluten-light for months.

My body is getting stronger, but I'm still having intermittent feeling of pressure in my throat (feels tight, but I don't think it's actually my wind pipe closing, I think it's my stomach/esophagus). It's actually kind of scary. Allergist assured me I'm not allergic to anything so I shouldn't worry. I recognized the feeling from when I ate wheat... which is why I feel like it's food. Maybe it is corn. I'll lay off it for a few days. I think I haven't allowed enough time in between new foods and supplements.

Hard for me to figure out because I've never had allergies...not to anything. And, I'm getting really tired of eating plain chicken and rice. I've been experimenting with plain diets since November, but either I'm not a linear enough thinker and organizer (or too ADD or something!) to figure it out. I feel like I need a chart and someone telling me what to eat and when. Is there a book out there that will do this for me??

Hard for me to figure out because I've never had allergies...not to anything. And, I'm getting really tired of eating plain chicken and rice. I've been experimenting with plain diets since November, but either I'm not a linear enough thinker and organizer (or too ADD or something!) to figure it out. I feel like I need a chart and someone telling me what to eat and when. Is there a book out there that will do this for me??

I'm really sorry you're having such a hard time!

I never had allergies either (tested negative six months ago), but they CAN develop in adults. Last month I had an anaphylactic reaction to a soup with too many members of the "umbelliferae" family (celery, parsnips, carrots, parsley). Intolerances don't show up on skin tests, but the symptoms can really affect the quality of your life.

"Breaking the Vicious Cycle" is a good book. You can also check out some of the SCD websites like www.pecanbread.com. They'll give you very specific instructions and lots of recipes.

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I have been recovering on the SCD too and it has been very helpful for many of my previous health issues, most of which are either much improved or gone completely, however, I still have issues with my digestion and am coming round to the idea that it may be due to a lack of certain enzymes.

I suspect that has been the problem for a long time but it got to the point in the end where it just could hardly cope any more. Certainly carbs have been a problem for me for years and having now been doing some research on this I suspect that the damage that the 'bad food' has done to my body has somehow restricted its ability to produce enough of the relevant enzymes to enable my gut to digest carbs properly.

Other people may have problems with protein digestion or fat digestion due to a lack of protease or lipase, etc. My Doc changed my Diabetes drug and everything fell apart after that - I suspect that somehow what digestive enzyme activity I had left was diverted as my body struggled to cope with the darned drug.

When I eat I get a banging/thumping going on that I can feel through my body - I have noticed that the only time it tends to go is if I just eat mainly raw food and that, I am sure, is because of the enzymes in the food.

Apart from fresh fruit and veg (and intensively farmed stuff grown in poor soil will be much lower in enzymes too) most of us get very little in the way of any supplemental enzymes. Illness, trauma, stress and injury can further deplete our body of the enzymes we do have. Pasteurisation kills all the enzymes in the milk so we get nothing from that - the lipase for instance which could digest the fats in the milk is not there, and that is one of many. Traditional diets would include things like yogurt, kefir, natto, tofu, tempeh, and other fermented foods, all of which help to supply enzymes, and most of which the like of us eating the 'Western' diet would rarely, if ever, touch.

I always said that we don't need carbs to function. That, to a certain extent is true. I would always pull up the example of the Inuit who eat mostly protein and fat and very little, if any, carbs, yet function quite adequately on their diet - have plenty of energy, are rarely sick and manage to function in one of the coldest parts of the earth. What I hadn't realised until I was researching the enzyme thing is that they eat a lot of (often quite putrid) fermented fish, whale, walrus, etc., foods that make up staples, so their diet is full of enzymes.

The digestion uses a huge amount of energy and the greater the lack of enzymes the harder it has to struggle to digest the food. I don't know about you but I have always gotten more fatigued after eating than at any other time. I used to get times when I could easily have laid down in the street I was so exhausted. It's been like living on borderline Chronic Fatigue all my life.

I am researching enzymes at the moment - I have realised to my cost that not all brands are good - I just took some Solgar enzymes for a few days and it has knocked me right back! I suspect that I did not need the Betaine which ended up over-acidifying my stomach and damaging my gut again, so I am looking for a good source without that. I understand that plant-based ones are better than animal-based too, which is what the Solgar are - with Ox Bile - since when do Oxen eat a roast dinner?? Is it even the same as our bile? Yuk.

I tell you, it is a nightmare trying to figure out what is wrong, and when you do get some idea it is a minefield trying to find the right remedy!

My theory on your sudden descent into food intolerance is that the bout of flu drew so much enzyme activity in order to facilitate recovery, that it may well have left you deplete of enzymes in other areas.

People often say that it took a trigger to set off their Celiac or gluten intolerance or whatever - just maybe that is because that trigger set off a cascade of events due to an enzyme depletion and the enzyme depletion left the body unable to cope in other areas.

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After years of being gluten-free, I seem to have developed some intolerances too. Luckily they are not as severe as a gluten reaction. But they are annoying and require immodium! I've possibly narrowed it down to soy or xanthan. It's such a pain. I was feeling good for years and this just sucks. Anyways as usual, people are posting great advice here. I guess I'll have to keep a food journal. I would love to try the SCD also, but I'm unfortunately living with my senior parents and sharing a small kitchen, etc. When I lived in my own house (with my husband) my kitchen was gluten-free, maybe that's part of the problem. I miss my kitchen. Oops, try to stay on topic!

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Not to say misery loves company, I wish you all felt better, but I kind of felt like I was alone. Gluten kills me, I have no doubt about that. But a lot of other things are pretty miserable as well. I've been able to get off my medicine for weeks at a time, but one wrong thing and bam, sick again... not as sick as gluten sick, but sick for several days, requiring some medicine, although 1/30th of what I was taking on a daily basis before.

I think Mother of Jibril gives really good advice, and has helped me a lot thus far. Like when I was trying to add in some vegetables and kept getting sick, had no idea bell peppers were nightshades. It makes sense, tomato paste in gluten free bbq sauce does not bother me, raw tomato does. I think I'm just going to have to accept these limitations as long as I have them.

I hear you Thleensd, plain food is alright, but it's hard to remember all the stuff you can't eat. I'm not dx'ed, it may just be intolerance for me. You however know, so... one assumes you have intestinal damage? From what I have read, it may take 6mos to a year to repair. You may find you are not as intolerant after that, perhaps keep to the simple stuff for long enough, and give your body time to heal?

Meline is right, the best way to do it, for me this has worked alright so far, is just go very basic, get to a point you know is safe, and slowly add in foods, one at a time. This was the advice from my allergist, no allergies here either. Keep a journal of the food, as it helps. Hopefully you can build up a repertoire of things that do not bother you, and then you can try things later on.

I have found, for instance, I can tolerate gluten-free corn chips, in moderation. Some things I just can't eat every day. Salsa, is always bad for me, always. I have never eaten it and felt alright. I'm stupid though, and I keep trying it again. I should make my own tomato-less salsa or something. I think it just depends on your specific symptoms, I want a chart too. I want someone to tell me exactly everything I can eat that won't make me sick, but no one knows. It's just a process of trial and error.

I wouldn't suggest getting attached to any serious stomach calming medicines, because they have been rough for me to get off, but maybe something for the real bad times, imho, something that doesn't have ibuprofen, aspirin or tylenol. And maybe give your body a little time if you react badly to something after 3-4 days before you try something new. I think only a journal can help you do this. It's a horrendous pain... but I think a lot of us are feeling it with you.

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I have been recovering on the SCD too and it has been very helpful for many of my previous health issues, most of which are either much improved or gone completely, however, I still have issues with my digestion and am coming round to the idea that it may be due to a lack of certain enzymes.

I suspect that has been the problem for a long time but it got to the point in the end where it just could hardly cope any more. Certainly carbs have been a problem for me for years and having now been doing some research on this I suspect that the damage that the 'bad food' has done to my body has somehow restricted its ability to produce enough of the relevant enzymes to enable my gut to digest carbs properly.

This sounds a lot like me. Rice is fine, sugar is fine... those carbs. Other carbs are not fine at all. I usually stick to meat and rice. Occasionally banana... corn chips as I said, on occasion, they will make me sick if I eat too many. As will most carbs. I would really like to find out if you find some place that sells amylase or whatever you get that you think helps. It seems like the complex carbs do not digest well at all. Meat is fine... seems to be one of the few things that doesn't bother me.

I like what you said about the way corn is farmed too, in Michael Pollan's book he talks quite a lot about the nutrients lacking in food, compared to say.. 60 years ago. He references something that says one apple from the 1940s is equivalent to 3 apples today in terms of vitamin content and such. Because everything is mass produced in the cheapest way, and very little is returned to the soil. That part resonates... I think it's possible, at least for me, that I have been damaged over a long period, suppressed it heavily with motility slowing agents, and probably should have went to a basic simple diet years ago, now it's hard to find anything that doesn't cause me some distress.

I think you need to take a little time to learn about DH and celiac disease. Celiac and DH are technically autoimmune disorders. This is about DH:
https://celiac.org/celiac-disease/understanding-celiac-disease-2/dermatitis-herpetiformis/
Learning about celiac disease (overview):
https://celiac.org/celiac-disease/understanding-celiac-disease-2/what-is-celiac-disease/
Testing for celiac disease via blood test:
https://celiac.org/celiac-disease/understanding-celiac-disease-2/diagnosing-celiac-disease/screening/
I think the full panel is around $400 and the basic budget screening which is pretty darn good (TTG IgA) is under $100.
If you are paying for your medical care (even under insurance) you have the RIGHT to copies of everything. So, when your doctor orders a lab test, ask for a copy of the order, so YOU know what he is ordering. Then you can google to see if he/she is ordering the right things. Get a copy of the results. Get a copy of the costs/receipt if you are paying out of pocket. Put your requests in writing.
I think some labs and doctors use the term for gluten allergy incorrectly. 1. There is a wheat allergy (IgE) that is like a peanut allergy which can cause anaphylactic reactions (throat swelling, breathing issues, drop in blood pressure). There are some blood tests that are about 50% accurate, along with skin scratch tests (also not super accurate. 2. There is celiac disease (autoimmune that when exposed to gluten attacks the intestinal track, skin or brain) triggered by gluten (I gave you the blood tests: TTG, DGP EMA). 3) Non-celiac Gluten sensitivity or Intolerance which is like celiac in terms of symptoms, but no antibodies are generated and intestinal damage does not occur. This diagnosis is reached when you have failed the first two as there are n tests for it.
Read through the DH section of this forum for symptoms and tips.
I hope this helps.
Finally, if you really suspect DH, you can always go gluten free. Keep in mind that you need to be strict and you need to adhere to the diet for at least six months to a year.

I mean I might get a prescription refill, or a new vitamin pill for example, and take it for awhile, with absolutely no symptoms. As we know, no symptoms does not mean no damage being done. I will feel fine for weeks, but then I start feeling awful, like a bad flu coming on. I never did get the intestinal symptoms others get.
This for me is the hardest part of having Celiac's, figuring out what did it. Last month I ended up with pneumonia because I thought the achey symptoms I was having was from gluten, maybe from cross contamination even though my kitchen is off limits to gluten, maybe from some new prescription, maybe from some new tea I was trying, maybe from new vitamins (marked gluten free but not certified, those have gotten me before), so I stopped taking all of that but didn't feel better and kept getting worse. It took me awhile to figure out I actually had a flu and by that time it went to my lungs and had to go to urgent care.

I think, at least from my personal experience, that these tests are accurate if you were diagnosed including blood work that was positive. All of the tests on my panel were positive by large numbers at diagnosis and over the next year, they went to very low normal for the ranges given. My GI symptoms were gone by then and the lingering neuro ones took longer to heal but they did. I would assume in a highly symptomatic Celiac, that resolution of symptoms, normalization of the blood work and weight gain would indicate healing. Whether I am 100% healed or not doesn't matter as my health is far better today than it was in my youth. I have not developed any more AI diseases than the 4 I already have and I call that a big win.
I think doctors do not take into account enough symptom resolution, weight gain for the skinny Celiac's or weight loss for those on the opposite end of the spectrum, as important markers for healing. I am not even sure if it is totally necessary for a person to heal 100% as there is overlap in the small intestine and nutrients are absorbed not in just one place, making it a brilliant design, when you think of it. If your health has improved dramatically on the gluten-free diet, along with the other things mentioned, then consider yourself healed well enough that you've regained your health back. Repeat endoscopy's are really for those still having problems.

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Celiac.com was founded in 1995 by Scott Adams, author of Cereal Killers, founder and publisher of Journal of Gluten Sensitivity, and founder of The Gluten-Free Mall, who had a single goal for the site: To help as many people as possible with celiac disease get diagnosed and living a happy, healthy gluten-free life!